Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

How do you cope when you live alone?

irishrambling
Posted by

I have Stage 4 Kidney cancer which has now spread to my brain. I'm on steroids and should be starting radiotherapy next week. I live alone in a small village and the hospital is over an hour away. My driving licence has been removed and I am  totally dependent on my friends for lifts.

Another complicating factor is my husband lives in care over half an hour away. I have a brother who rings me telling me he wants to kill himself. Yesterday was just ghastly. I want to live and he wants to die.

Friends have been great so far but I can already feel the fatigue setting in as they realise this could go on for some time. I have other siblings living 3 hours away. They are urging me to sell furniture and move a bed downstairs which makes me feel they are rushing me into death.

Apart from my kidney being removed and the steroids, I have had no treatment so feel there are still options. But how do I go through them on my own?

I thought I had a strong church community. But the church is a little drive away so impossible to reach and the vicar has said I am too far away for him to bring communion. After more than 12 years as a member of that church! 

I feel very lost. How are others coping on their own? 

Gragon
Posted by

Hi ,

It is lovely to meet you but I am sorry that it has to be here.

I'm afraid that I cannot offer much advice in this area as I live with my wife and son.  I was raised in a rural area and have some understanding of the concerns that you have raised here.  Have you contacted the hospital transport services for transport to and from your appointments?  It is not always the best of services and when my mother used it she needed to take a book or something with her as she did spend significant periods of time sitting waiting for the transport to arrive.

It might be helpful if you could put a bit a bit of detail in your profile to assist others in understanding your situation.  If you click on anyone's username you can read their profile to get an idea of where they are currently at.  To edit your profile click on your username at the top right of the page, this will take you to your profile and there is an "edit profile" button which will allow you to add or remove detail to your profile.

You say that you have had no treatment yet, may I ask what type of kidney cancer you have been diagnosed with?  Certainly treatments for certain types of kidney cancer have developed a lot in recent years.

I hope that you get some more useful answers to your question soon.

Wishing you all the best,

Gragon x

buttercup01
Posted by

Hello ,

I also have stage 4 kidney cancer . ( Renal cell carcinoma). I had a brain tumour 6 years ago which was treated by Cyberknife ( stereotactic radiotherapy) at Mt Vernon  in Northwood, Middx.

Treatment options are detailed on the website - 

.https://www.macmillan.org.uk/information-and-support/brain-tumours-secondary

The other thing u can do for info  is ring the Helpline on 0808 808 0000, 8am to 8pm  7 days a week 

Might I suggest you also join the Brain, secondary group as well as putting a bit in your profile, to help others and also save u keep repeating yourself.

There are many drugs treatments for secondary kidney cancer, so stage 4's not the end of the road by any means. Many of us in this group have been on such drugs for years.

I'm sorry to hear how isolated you are. I live in a rural area too and would be lost without my husband to take me to the cancer hospital 1.5 hours 'drive each way. That said, I am going by taxi this time. We also have a volunteer drivers' scheme operated by the local council, for which you pay about 50p/ mile.

Do you have anything similar or possibly run by your church?

Do I take it you're in Ireland, judging by your username? Unfortunately I'm unfamiliar with the heath system over there, but as   says there should be some kind of hospital transport available.

It's a bit of a last resort tho,as it can take some time to trundle round everywhere.

Do keep in touch and let us know how you're getting on

Sue x

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
irishrambling
Posted by

Thanks for the info about the profile. I will do that.

I'm not  in Ireland but in the Peak District. Because of where I live I am caught between 3 different hospitals and had my kidney removed at a fourth. This is why I always fall between different stools. The other day it took 12 calls to even arrange my MRI, which I had been told was very urgent. 

I'll keep in touch.

buttercup01
Posted by

Hi

Crikey, 4 different hospitals!

 Do join the Brain,secondary cancer group too. I'm a member of that as well, so there'll be at least one famiiar   voice.

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Gragon
Posted by

Hello again ,

I would normally advise you to contact your cancer specialist nurse but being between hospitals this might not be straight forward either.  Have you applied for a Macmillan nurse for support.  They can be very good if they are available in your area.

If you click on the link (here) it will take you to a page which explains how you apply to have a Macmillan nurse assigned to you.  The easiest way might be through a referral from your GP.  The nurse will be aware of all the resources in your area and how to access them for you.  They would be able to act as your advocate in sorting out what happens where between the hospitals and making sure that the service is joined up.

All the best,

Gragon x

buttercup01
Posted by

Good thinking

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Jo300
Posted by

Hi irishrambling

I'm not on my own either, I'm lucky to have my husband and son at home, so I can only sympathise with you on that score I'm afraid. 

I'd nut all of my siblings. ;-)
My mother has been totally miserable since my Dad died 6 years ago and has made zero attempt at all to try to improve her life. We've tried everything. In the last couple of months I've managed to tell her how bloody lucky she is, what an amazing life she's had and how bloody selfish she is to keep telling me how her life is so awful when I could only dream of having a life like hers. Yep - that went down well. Last week, while I was going through all of the "disasters in her house"  she start to get teary at how awful it was being 79 - so I was like - well, we're both living through shit and we have no time to be sorry for ourselves so what's next? I'm afraid I've lost some of my patience and actually it felt OK saying hey - life's not just about you.

Assuming the treatment you've just had is successful - why on earth do you need to move downstairs and only use half you house? Unless you'd actively choose to downsize? Sod that.

I'm sad by your church's response. Is that just the vicar? Do the congregation know that you'd like to be there and can't drive at the moment? They might be more than happy to take it in turns to help you get there?

Is your driving licence removal permanent or short term? That's a pain - I'd struggle if I wasn't able to drive. I'm not sure if your local community has anything similar - but we have a community transport system. It's supposed to be for older people once they can no longer drive but in your situation you'd definitely be able to use it. It's run by volunteers and is advertised in the clinics / day care centres etc.

Definitely ask about hospital transport for your appointments too.

I think there's an element of us all being on our own in our own minds sometimes - even if we're not physically living alone. Sometimes that's a scary place to be - and probably why most of us are here - getting support from people who can understand that. I think for the most part you simply get into a routine. If your treatment works, if you're stable, if you can see progression in your life, it all starts to feel a bit more positive and that can happen quite quickly.

I'm feeling cross for you about the vicar. I'd tell him he's a selfish a*se lol. All the support you've given and that's what you get? Yep - he'd be getting a piece of my mind too. Eek!!

Hope you're feeling OK today after your op.

Jo
x
buttercup01
Posted by

Tell it like it is ;!!!

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
irishrambling
Posted by

While I was waiting for the gamma knife on Tuesday, I asked to see a hospital chaplain. They made a little safe space for us and we talked for nearly 90 minutes. It was so helpful.

We did both laugh when, because of the frame, I managed to stick the communion wafer up my nose.

So I've moved on a lot on that one. 

Was talking to a friend today about the anger of it all. And why anger is seen as such a negative emotion. But anger used changes things. So I'm embracing it as a positive. 

buttercup01
Posted by

Positive anger can b so powerful xx

Lol re communion wafer up your nose ..

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Gragon
Posted by

Hi ,

It's good to hear that you managed to talk to the chaplain and found it so helpful.  I am fairly even tempered but do have the occasional blow up and whilst I might apologise for what I say at these times I never apologise for getting angry.  As you say it is sometimes a vehicle for change but it can also be quite cathartic and allows you to get rid of a lot of negativity which allows you to see the picture clearly again.

You mentioned in one of your posts that one of the hospitals you had to attend was Chesterfield.  I went to the old College of technology there over 25 years ago and whilst there I had to have my wisdom teeth removed for which I went to the hospital.  At that time it was a dispersed site and I actually had to be transported by ambulance from the ward to the operating theatre and back as they were so far apart.  I moved many years ago now so have not had to attend since but thankfully it has now been redeveloped.

One of the areas on this site which you might not be aware of is the in "in your area" section which is on the green banner which appears at the top of each page on the site.  If you put in Chesterfield there is mention of a befriending group based in Chesterfield which can assist with a variety of things including transport to and from hospital.  The advert was actually asking for volunteers but it also gives the contact details for the organisation so it might be worth giving them a call.

All the best,

Gragon x